That makes sense to somebody, I'm sure.
The Space Bag has been unplugged, the air allowed back in and is ready for use by another patient. I was given a certificate of completion and told I was a model patient, which only means that I am really, really good at lying down, not that I look beautiful.
I do have a certain glow about me now though.
What do non-model patients do, anyway? How hard can it actually be for a cancer patient to lie in one position for 15 minutes? Isn't that kind of what most of us do all day anyway? Do these non-modelers scratch themselves in the middle of a radiation beam, or keep forgetting where they are and try to sit up? Do they scream at the techs, spit at the machine as it revolves around them, or complain about the music playing?
Speaking of music, I had a special playlist just for this therapy, given to me by my friend Sue S, and big thanks to her. I listened to it on the way over to mentally prepare, and I highly recommend it to those of you who will be doing your own version of radiation. Be warned: some of the songs are so "danceable" that if you listen to them during therapy, you won't be a model patient, like me. You'll be twitching and toe-tapping and soon enough, break through your restraints to dance with the dosimetrist. (Especially on #13, my fav) I'd suggest that during actual rads, you listen to something boring, like vintage Elton John, so you can lie quietly and maybe even sleep.
Thank you Sue:
1. Radioactive (The Firm)
2. Gamma Ray (Beck)
3. Radiation (Gavin DeGraw)
4. We all Radiate (Average Superstar)
5. Love is a Radiation (The Black Seeds)
6. The Ballad of Marie Curie (Army of Lovers)
7. We Radiate (Goldfrapp)
8. Radioactivity (Kraftwerk)
9. Radiate (Puddle of Mud)
10. Electron Blue (REM)
11. Drunk on Radiation (Lady Sovereign)
12. Radiation Vibe (Fountains of Wayne)
13. Electron Romance (Strontium 90)
14. Radioactive (Kings of Leon)
It's pretty amazing, when you think about it, knowing that stuff of stars has passed through my body and has hopefully snapped the DNA of my tumor into pieces, never to recover. And, how complicated it was - there was a Physicist there, a Dosimetrist, the Radiation Oncologist, Radiation Therapists, several technicians, all watching me on camera and computer as I was radiated, dosage carefully planned in accordance with bodily motion. I wish my younger son could have been there as he is going to be a scientist and is making noises about going into medicine as a surgeon. I think being a radiation oncologist or radiation physicist would be right up his higher math alley and tap into his skill set.
Speaking of college bills, I hate to think how much this treatment cost. And, I wonder why my insurance keeps approving new, expensive and uncommon therapies for an ex-school secretary who doesn't add much value to society. (Shhhhhh.....) I'm not complaining, and thank you insurance, when we chose you, we certainly chose right.
In a week, I have blood tests to check liver function. In six weeks, I will have a CT scan to see if there is improvement. It takes up to six months to get final results, and this treatment will confuse a PET machine for a time so there will be some limbo until everything settles down.
Kind of like what happened with the resection, only this time I know it.
Of course, I'm now living life without a binky or security blanket. I'm off chemo as my body can't tolerate it anymore, and won't know if this has worked for a while. While I have every confidence that SBRT will be successful for this area of cancer, I can't ignore the fact that cancer could continue to grow, either in my liver or elsewhere - now unchecked by chemo. That is what metastatic breast cancer does.
How dependent we Stage IV BC metsters become on chemo! It's a hate/love/hate relationship, but we all know that when we can't have chemo anymore, it's often time to say good-bye.
I am just going to live under the assumption that this treatment killed that tumor, no new cancer will form for a while, perjeta will help, and it bought me enough time to make it to my son's high school graduation (this school year), which has been my goal since I found out I had mets. Hey, maybe I'll be greedy and start to hope for time beyond that too.
Depending on the study, it looks like median overall survival after SBRT ranges from 13-20 months, and has a local control range in the 90th percentile. Since there are no signs of tumor growth anywhere else at my last PET, I am going to mentally put myself in the "median is not the message" group and assume I'm on the upper end of that line drawn down the middle. In my mind, that the tumor is dead, and when more come back, it won't be for at least 20 months, maybe longer. Of course, I have to temper that hope with reality, as the resection failure was swift, and seriously disappointing for me; I don't want to go through that again. I have an incurable disease, I can't go into denial about that.
Side effects have been minimal. I've been tired, of course, and spend the day in my pajamas with a blanket around my shoulders, which is not unusual as I do that almost every day. Right now, I don't have any flickers of energy like I had been starting to get before this treatment, but I hope and suspect it will come back. The paperwork they gave me says that the fatigue can last up to three months. I've had some nausea which has been controllable with medication. I have some pain in my stomach and mid-section, which is not new but which is slightly worse. My biggest problem is food intake. I've no desire to eat; my stomach hurts worse when food is in it, the thought of eating is unpleasant and nauseating, and I am still losing weight. This has been ongoing since before radiation so I can't blame it on SBRT, and I do hope that it is arrested as I begin to heal. I lost some weight caring for my Dad before his death which was understandable as I moved much more than normal and had no time to eat, but then lost some more after I got home which is inexplicable. I imagine my doctor will put me on a drug for weight gain if I get down into the 80s (which is just a pound or two away) but I would prefer to just gain on my own. It is hard when nothing sounds good. My husband will ask me "Do you want something to eat" but the answer is no, and it is too difficult trying to figure out what I can tolerate.
No, I don't drink Boost or Ensure, that stuff is disgusting. If I had a Blizzard from Dairy Queen, I might eat one of them though. Hint hint for whenever my husband reads this. :)
I do force myself to eat a yogurt and a piece of fruit every day and some of whatever my husband cooks for dinner. (Yes, he has to do the cooking these days and has had to for a while.)
Finally, my last symptom: I have started to get headaches, which isn't a listed side effect but I've always been prone to them. They also started before SBRT but seem to have gotten worse since. I'm hoping it was just the stress on my back and neck of the position I had to lie in during therapy; or perhaps a side effect of not eating or maybe just stress about my Dad. I hope they go away. Dealing with all of this over the years has been hard enough, adding headaches on top of it is just wrong.
Oddly enough, even my powerful drugs don't get rid of them; only Imitrex does. I assume that means they are still migraines, although they don't hurt as much as my migraines of old did.
My best friend of 25 years came up to visit me. It always warms my heart when somebody wants to see me when I'm not sick, it feels to me like they are not obligated then. Unfortunately, I wasn't well enough to do anything with her so we just colored with my new alcohol markers. (No wonder people don't visit!) She went with me to an SBRT appointment and naturally, charmed her way into the room to take a couple of photos. They wouldn't let her take them of me strapped in because they have to pull up the gown to expose my breasticle area, so you miss the torture clamp. But you can get an idea of what the place looks like.
|The blue is the bag of beads that is shaped like my body-doesn't it look like me?.|
|I fit perfectly, and happily. Behind me is the radiation machine that moves forward and whirls around me. Look close and you can see a green laser on my face.|
|Why not smile? I am, after all, a model. Patient, I mean. See the grab bars behind my head my hands are on? My frozen shoulder is getting better to be able to do that. Just took 3 years.....|
What will I do with all that free time?